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The Diagnosis Battlefield

The Diagnosis Battlefield

By Amalah

Amalah is currently on maternity leave. In her absence, however, she’s just as tethered to the computer as ever, and will be using this space to ask you — our intrepid Advice Smackdown Commenter Crew — questions. What’s been baffling her, as a parent, you may wonder? Why, she’s so glad you asked!

Advice Smackdown ArchivesDear Internet-Wan Kenobi,

So we’ve been dealing with a myriad of developmental hiccups, special needs, therapy plans, interventions, and diagnoses (and the myriad of family-and-friend REACTIONS to all those things) for almost four full years now. I’ve been openly blogging about a good 90% of that stuff for almost four full years now too. We should be champs at this, right? Or at least not…cowards about it, right?

But here’s the thing: No one in our family was very, well, familiar with a lot of the labels and thingies we were dealing with, especially once we moved past the relatively simple realm of “speech delayed.” Sensory Processing Disorder? Dyspraxia? Hypotonia? Oral defensiveness? Pervasive Developmental Disorder Not Otherwise Specified HUH WHAT NOW?

So for the most part, family members whom we have regular interaction have with more or less trusted our judgment and guidance when it came to All Things Noah, from discipline to approved foods and activities and all that. But along the way, we’ve certainly gotten an earful about Other Children and Other Parents and Other Diagnoses — namely, ADHD.

My in-laws have a lot of opinions about ADHD. The first and foremost being that it doesn’t exist, that it’s overdiagnosed by parents and schools looking to drug up children, that it’s almost 100% caused by a bad diet and eating the wrong things and toxins, that ADHD children simply aren’t given boundaries and are spoiled, etc. etc. etc. Oh, no matter how many times I’ve told her that she’s repeating some kind of special education urban legend, my MIL is convinced that public schools are allowed to “force” you to put your child on Ritalin, against your will and even your doctor’s advice.

So…we haven’t exactly told them that Noah was diagnosed with ADHD yet.

Now, here’s the thing: We aren’t in any rush to try medication. It’s not something we will rule out in the future, but it’s not on the table right now, at his current age and grade level. We HAVE made significant changes to Noah’s diet already (zero food dyes, artificial flavors, preservatives) and are currently experimenting with an elimination diet targeting refined white sugar and flour. And several homeopathic remedies that may or may not be a load of overpriced snake oil, but hey, they’re worth a try. Noah will be seeing a therapist regularly to help him with his anxiety, attending OT summer camp, starting kindergarten with some really fantastic supports and accommodations in place, basically: WE’VE GOT THIS. And I think we’ll do a pretty decent-ish, open-minded and educated job.

But I don’t think it will ever be enough for them, you know? I’m terrified that once they “know” the new “label” we’ll NEVER HEAR THE END OF IT. The undermining comments, the takeover-y diet attempts (they still don’t believe us that yes, we tried it, but no, it’s NOT GLUTEN), the sending us books and links that support the more — ahem — quackery end of ADHD and ASD treatments, the overstepping with discipline…gah. Stuff we’re already seeing more and more lately and have been struggling to re-draw the boundaries around Noah and his health and behavior ALREADY.

So…I don’t even know what my question is, exactly. Does anybody else have a similar experience? What did you DO? Or say? Did you ever just…stop offering information about your child’s progress? Or did you continue to send your own books and articles and hope that eventually the person in question would accept YOUR approach and stop pushing so hard for their own?

Leave your thoughts, suggestions, sympathies and counterpoints in the comments section.

Amalah
About the Author

Amy Corbett Storch

Amalah

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Ama...

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Amalah. Also, it’s pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to [email protected].

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.

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Kelly F.
Guest

I don’t have the intense and challenging job of establishing a Plan for a special needs child, but my gut instinct would be to dial back on the amount of info I provide to family who are pushy or judgy about things. If you think telling them may lead to a better understanding of Noah and provide some benefit to Noah, then share. If you think it will lead to questioning his diet/discipline/future meds, then don’t share the diagnosis. I know that might feel wrong or be difficult but that would be my inclination. Best of luck to Noah in… Read more »

Susan Croft
Guest
Susan Croft

I may be a little naive here, but is this something that MUST be discussed with the grandparents? If they don’t believe there is a real problem, why should you debate it with them. He is their grandchild and (I assume) they will accept him regardless. As to his diet – you are the Mom and he gets to eat what you say he gets to eat. It may be a little difficult, but I would think offering no explanation would be easier than offering an explanation you know they would judge and analyze to death.

Amy
Guest
Amy

Dealing with family certainly is a very tricky and potentially volatile event.  Especially where the family is of the ‘in-law’ variety (at least this is true in my case).  Navigating all the potential issues can be exhausting and I imagine this is only complicated by your (justified) efforts to protect your child from their opinions. I really do sympathise with you here and can only hope that my ‘solution’ might go some way toward helping in yours.  I realised that I needed to set boundaries with them.  It was hard and certainly made things uncomfortable for a while but it… Read more »

the grumbles
Guest

No personal experience here but I’m with Kelly. You guys are clearly on top of it and focusing on what’s best for Noah. Right now telling them every detail might NOT be what’s best for Noah. Not that I think you should lie, or mislead them, but… I wouldn’t exactly volunteer any additional information either. Just another one of those situations where you have to assert that you (parents) are the boss and not them (grandparents) but you appreciate that they care. You know the drill.

chiquita
Guest
chiquita

Easy, don’t tell them. If they can’t butt out, then they don’t get all the information. Sounds like they (she?) are annoying enough already, without knowing about the diagnosis. You are pretty eloquent about protecting your child. I think this is a clear cut case where they aren’t on the “need to know” list.

SarahB
Guest
SarahB

I think a little sit-down with the ILs might be in order, and I think, given all you’ve been through in the last few months but also in general, your husband needs to be the one to do it.   He can let them know, briefly, what’s going on, that you both feel good about the plan in place between Noah’s doctor, the school system, the camp, etc, and that what you really need is support as opposed to advice.  He needs to lay out some boundaries about deferring to you both as Noah’s parents when it comes to diet… Read more »

Brandi
Guest
Brandi

First off, i’m sorry you have to deal with this crap Amy. Now, what I would do is have Jason be the messenger here. He would call them, tell them the diagnosis then say in no uncertain terms, we know how you feel about this,but we’re doing what we can and what we’re comfortable with and if you don’t have anything supportive to say then don’t say anything at all. And that any meddling in the future will be met with ending the conversation or visit right away becuase you don’t need that from people who need to trust you… Read more »

Susan
Guest
Susan

My daughter is 16 months old so I’m not an expert in the parenting side of things but I am a therapist with many years of experience in working with special needs children. My sense has always been that the diagnosis- the name itself- is really only useful to those who understand it. Your in-laws already know Noah’s behaviors and symptoms. They’ve demonstrated very little understanding of the diagnosis, so why bother with that part?  I’ve noticed that my pediatrician has taken the same approach with general health concerns. Who cares if it’s the flu specifically? She has a fever.… Read more »

Mouse
Guest

My in-laws completely changed their tune both after E. started OT (and made noticeable improvements) and  we moved closer and they got to spend time with him regularly (and, therefore, got to see the range of issues).  I get that moving just for the purpose of getting them to understand is not practical, but it has meant we can have real conversations with them about his challenges and not have them pass it off as us being over-anxious. Before all that, A. did explain to them one time that they needed to stop telling us we were worrying too much… Read more »

Susan
Guest
Susan

And also- that just sucks! They really should be more supportive about this. Like it’s not hard enough already.

jodifur
Guest

I have never told my inlaws one thing about Michaels struggles or diagnosis and I don’t plan to.  I just wouldn’t tell them.  But that’s me.  If you feel you must, than I would let Jason do it and also explain their opinions are not welcome.

Moosilaneous
Guest

Sounds to me like you are doing a great job!

Susan has it right, names don’t really help except those who already understand what they entail. It is the behaviour that matters, and what approaches work, not the label. 

Nevertheless, it might help to have your husband ask the ILs to scale it back a bit on the “helpful” suggestions. Your little family has enough going on. 

Katie
Guest
Katie

I’m making the assumption that surely your in-laws realize that Noah has some behavioral issues. I’m giving them credit, as family members who have acted as babysitters/caretakers, that these issues are indeed, “real.” If that’s the case, than I totally agree with Susan. There’s no need to share the fact that while Noah’s struggles persist, the official “name” has changed. Fight that battle only when/if the grandparents are in a position where they are caring for Noah and you’ve chosen to medicate, and there are drugs involved. Also…if you ever go the drugs route….it’s amazing how many of my family… Read more »

Kat
Guest
Kat

This is interesting, especially considering your last post regarding the friend with the mean kid. A lot of kids have issues and when you share you get lots of “help” and “advice”. When you don’t share you get your last post..”that kid is a brat and someone should talk to his mother (not father, of course)”. I find this is a fine line, even as your kid gets older and as my kid has, more stable in his behavior. It still comes up and you have to share with soccer coaches or a new teacher, or friend. They are never… Read more »

laura
Guest

my family has a shit-ton of issues too (and my 9-year old & noah are nearly the same) and i’ve learned if someone can’t handle it, don’t share it. we do a lot of self-preservation here.

and for what it’s worth, we opted out of doing ADHD drugs too, we take him to the chiropractor at least weekly, who also recommended 5HTP. it takes just enough of the edge off to handle, and he goes to bed super-early to read, which helps a ton too.

JB
Guest
JB

@Kat, I think that is apples and oranges. If another child is mean to your own one, it’s not out of line to talk to his mom – SINCE THE MOM IS YOUR FRIEND, NOT THE DAD, in this example – and mention it. If the mom then says “oh, Bobby has some developmental issues, and we’re working on them” then you can say ahhh ok no problem!, I just wanted to let you know what happened this afternoon when Bobby hit Susie, etc. In THIS, completely different, case – talking to your IN-LAWS about Their grandchild, is completely different… Read more »

Carrie
Guest
Carrie

I don’t even have a special needs child, and I really control the info people get about my kids. They don’t need to know how much they sleep, if they are circ’d, how often the baby nurses, how much screen time they get, ect. Once I realized I wasn’t obligated to share all this information my life got a lot easier. I say keep it on the downlow unless you have a compelling reason to tell them. It will make your life less stressful.

Babs
Guest
Babs

My husband has headaches from an incident years ago. There is no physiological reason he gets them, so the family sends and offers mucho advice on migraines (which they are not) and dehydration (REALLY??) and other head related issues. So, yeah, we get it. As for your son, why do you have to tell them chapter and verse of his diagnosis? I mean, isn’t Noah entitled to some privacy regarding his challenges? I say that because I have the most Second-Guessing in-laws in the known world and I figure my kids don’t need their second-guessing all the time. So when… Read more »

Kira
Guest
Kira

My daughter is just 17 months, and so I can’t really address your years of negotiating this territory.  BUT, my 17-month old daughter does have a slight speech delay.  We have decided to wait on any kind of intervention since her comprehension/motor skills are “on track” (whatever that means).  She also uses sign language.  Fast forward to a visit with my extended family, who do not see us very often.  We spent a weekend with my aunt and uncle who are CONVINCED that the reason my daughter is not using words is because we are using sign language with her.… Read more »

Amy
Guest

I don’t think I’d tell them. And if, at some future point, they found out and were like, “Why didn’t you tell us?!” I would say, “Knowing how you felt about ADHD, I didn’t want Noah’s diagnosis to affect your relationship with him.

Health information is private and federally protected as such for a reason. We don’t have to share everything.

Cary
Guest
Cary

It is not their business, it’s his. Not only do you owe them nothing, I would be careful to let him know that you understand that this is his personal information to share, and outside of doctors, therapists, teachers you will always seek his approval before discussing it. I highly recommend Disability is Natural, especially now that you are entering the school age years. Also, ask your OT what they think about listening therapy. Good Luck!

anon
Guest

mmmm . . . aren’t they going to see this question?

Brooke
Guest

I found it helped when we invited my MIL to be a part of the different therapies/classes/informational sessions with us. There was one particular intervention that we had (PCIT) that helped us a ton, and she was able to observe us practicing with the therapist, and then we also invited her to observe OT sessions, etc.. and then she saw the difference in behavior first-hand, as well as felt more involved with the solution…. in our case, MIL is our only babysitter, so it was reeeeally important that she have the info about him, and once she was involved, it… Read more »

Cammie
Guest

I was diagnosed with ADD when I was a kid.  I grew up hearing all the “you just need to be slapped more/You are spoiled” crap.   Trust me, NOT the case!  It is a true “condition” (I hate the word “disability”).  I reality, it’s just that the brain needs to re-route information some times, and it’s a bit harder, but not impossible.  I’ve been on and off of different meds during my life and I have chosen most of  my life to go w/o meds.   At this point, I’d say don’t fil in the in-laws.  If it comes… Read more »

blackhuff
Guest

My in-laws also have the similar feeling towards ADHD and it have been difficult. We don’t talk to them about his condition neither do they with us. We just don’t talk about it at all with them. My parents on the other hand are completely different surrounding our son’s ADHD. They even take him for therapy sessions etc. 
Sorry to hear that you have parents like I have with my in-laws. It is not easy, I know.  

Hillary
Guest
Hillary

Amy, just reading this post made me adore you even more – you are such a positive role model. Seriously. There are so few people who openly confront developmental issues in their children. When my daughter started getting diagnoses (hypotonia, developmental delays), I found your advice to be extremely helpful and the way you dealt with Noah was really comforting. There is no reason to be ashamed that our children have illnesses, but it is sometimes really hard to admit it, ask for support, and endure potentially unwelcome advice. Perhaps with your in-laws, you can rope them in as part… Read more »

Amy in StL
Guest
Amy in StL

I have to admit I didn’t think ADHD existed either. The kids I knew with it seemed just kind of undisciplined and spoiled. However, I’m not dating a 42 year old man with ADHD. I can’t imagine how tiring it was for his mom back in the 70s dealing with this. He is not lazy, he’s not undisciplined (dude is paying off his house in 15 years) but he is, um, scattered. He can’t take most meds because of glaucoma, so we just kind of muddle through. I get why it’s frustrating for them and I’m sure they want to… Read more »

professormama
Guest
professormama

I think the name ADHD does have a stigma attached, and it’s a weird label because like Autism or Asperger’s, there is a RANGE of severity and symptoms.  My son is just finishing kindergarten, and there are 2 kids in his class with serious developmental issues (requiring each to have their own aid at all times).  I don’t know what their diagnoses are, and I don’t need to, it’s not my business. The school and parents are doing everything they can to help these kids.  My son has gone over to one boy’s house for a couple of OT supervised… Read more »

Abi
Guest
Abi

I’m not a parent, but I was diagnosed with ADD in elementary school, and started taking medications for it around age twelve. I remember my mother sitting me down and telling me not to tell my grandmother about it, because my grandmother was prejudiced in much the same way that your relatives are. It broke my poor heart to think that my own grandmother would think so poorly of my parents’ judgment, and not believe that they were doing their best to take care of me. The reason they didn’t want me telling her was not because they didn’t want… Read more »

Brooke
Guest

http://psychcentral.com/blog/archives/2011/06/24/9-myths-misconceptions-and-stereotypes-about-adhd/

Not necessarily relevant to the question itself, but it was just posted today and might be timely for you. 🙂

Jamie S
Guest
Jamie S

I agree with Susan the therapist.  Include them in managing the behaviors associated with ADHD, but don’t necessarily tell them the label.  I was labeled as ADD in Elementary school, and always felt embarrassed about it.  I feel that in some cases I would’ve been treated differently if people hadn’t known…appreciated more for my positive attributes than some negative behaviors. I took medicine in elementary school (Ritalin), but personally I remember disliking the side-effects even in the second grade (lack of appetite, difficulty sleeping, feeling on edge).  The drug helped me to settle and be focused, but I chose to… Read more »

Angela
Guest

I like the suggestions to just not tell them the label. Sometimes that can get in the way as people have a lot of baggage attached to certain labels. But in my own examples, I’m an extremely, er, sharing person. Some would probably say OVER-sharing. But I’m honest and open on my blog (which is primarily for my family), facebook, twitter and in RL conversations as well. My mother is the biggest giver of unsolicited advice in our universe, but there is no way I’m holding back telling her stuff. (I think it’s actually a biological impossibility for me.) So… Read more »

Karen
Guest
Karen

I am so sorry you are going through this. Being the parent of 3 adopted and challenged children I can totally empathize. Our son in question that is now 20 was our “blooming onion” as I like to put it….seems you had to peel away diagnosis after diagnosis. I also felt it was important that my parents understand the diagnosis/s (or labels as some put it) but not for labeling purposes – but for the symptoms/care aspect. For them to understand his sensory integration issues they needed to know there was a condition – namely for his safety and well… Read more »